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Medical databases

The field of health informatics is rather large and Epiconcept has created many different information systems. We have selected a few of them that represent certain categories of information systems.

A plateform of databases accessed through a central portal allows for numerous health data records creation on the same architecture and in which all databases are accessible from a single point of entry with one authentification.

French association for combatting muscular diseases

In numerous research teams, one is often confronted with a large number of databases, each one more important the next, but are globally heterogenus in terms of the tools used to access the data, the architecture, the ergonomy and their accessibility. The objective of this platform was to physically centralise the databases, create a single access point for all of them, unify their architecture, optimise the creation preocess, standardise the ergonomy and standardise the interfacing with common third-party scientific applications

Technology

A Vooanoo platform with a central portal is used to manage the medical databases. This portal allows access to the general public allowing the diffusion of articles, news and documents. Once authentified, the user has access to much more information and specific to the databases that he/she is part of, as well as to other databases, without a second authentification to the other databases in which he has an account. The access by a patient to the portal allowing him/her to view certain data about themselves is being considered.

Each medical database is constructed using a common model known simply as the MASTER. This master pattern includes the architecture and common questions, a defined ergonomy, and options to activate or not certain functions.

The interconnections (import, export, webservices) with third party software such as the national rare disease database (BAMARA) allow for the integration of the portal’s medical applications with the information system of different research teams as well as facilitating the daily entry of medical data.

Organisation

The AFM-Telethon organisation is financing this application which includes a portal and the managment and creation of new databases. However, it is not at this level that the applications is precisely determined. The exact structure of the added databases are managed by project teams which include a scientific post, clinical representatives, geneticists, researcheres and individuals tasked to collect and manage the information.

Colaboration

Throughout the duration of this project, various committees met weekly for the generic tool which was conceived with AFM-Telethon. Monthly meetings were dedicated to putting in place the first database based on the Master, and making the right interconnections with third party systems. This first database will be for used for research on Duchenne muscular dystrophy.

Advantages

The information system allows

A decrease in time and cost when creating a new database

The use of a common tool that is understood and used by everyone

The homogenisation of databases to fascilitate statistical studies or transversal studies

A single point of entry to the database for clinicians, assistant research clinicians or data mangers involved in the data entry, coordination or the analysis of multiple registers.

Challenges

The greatest challenge of this project was the right choice of functions for this generic tool so that they are useful and above all pertinent for the entirety of the medical databases as well as for the as many as possible of the research teams.

Workload : 70 days

Fiftey work days for the creation of this generique tool and then around 20 days for the first new database on the platform. This included the software development and supervision, project management and committee meetings for the generic tool and the first database (Duchenne muscular dystrophy).

Voozanoo standard / custom development : 90/10

Other Epiconcept Voozanoo projects

“Phare” application chosen by Proche network

The Regional University Hospital Center in Lille, France has chosen to impliment EpiConcept’s Phare information system for people with hereditary predispositions to cancer. Phare is a software application to register and follow up patients with a hereditary risk to cancer and to manage their personalised treatment plan. Phare is based on Voozanoo 3.

The National Reference Center for Cytomegalovirus to use Voozanoo

As part of the Cytomegalovirus (CMV) epidemiological surveillance effort in France, the National Reference Center for CMV has chosen EpiConcept’s Voozanoo platform to collect infection declaration questionnaires.

The goal of this project is to create a patient follow-up system for the 25 expert centers in the French national clinical research network on Parkinson’s disease (NS-Park, FCRIN). The application is used as a centralised information system for medical personnel.

Myology Institute begins new study using Voozanoo

The Myology Institute is creating a natural history prospective study of 70 patients infected with spinal amyotrophy type 2 and 3. This study is coordinated by Dr. Laurent Servais. It is a multicentric study involving nine centres in three countries (France, Germany, Belgium).

Overhaul of the Revala 13 observatory database

The REVELA 13 observatory is a surveillance programme for kidney, bladder and acute Leukaemia cancers in the Bouches-du-Rhône department of France. It is upgrading its Voozanoo information system to a relational database with geographic metadata.

Creation of a questionnaire platform for the “Constances” cohort

EpiConcept has put in place a Voozanoo platform for collecting information from the participants of the Constances cohort (www.constances.fr). This platform allows the cohort management team to create their own questionnaires.

Information system for fighting malaria in Thailand and Myanmar

The Shoklo Malaria Research Unit had created its own information system in 2014 using the publicly available Voozanoo portal and have since contracted EpiConcept to put in place new capabilities. This information system for fighting malaria is used in Thailand and Myanmar.

E4N, a large epidemiological study on families to use Voozanoo

Inserm’s Unit 1018 team 9 “Nutrition, hormones and women’s health” has chosen EpiConcept to put in place its data collection platform for their extensive E4N study. The E4N public web site can be found at https://e4n.fr.